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SIBLINGS AND SOCIAL CAPITAL 1
RUNNING HEAD: SIBLINGS AND SOCIAL CAPITAL
Title: Reciprocity and Social Capital in Sibling Relationships of People with Disabilities
John Kramer, Ph.D. Institute for Community Inclusion, University of Massachusetts Boston
Allison Hall, Ph.D. Institute for Community Inclusion, University of Massachusetts Boston
Tamar Heller, Ph.D. Institute on Disability and Human Development, University of Illinois at Chicago As appeared in: John Kramer, Allison Hall, and Tamar Heller (2013) Reciprocity and Social Capital in Sibling Relationships of People With Disabilities. Intellectual and Developmental Disabilities: December 2013, Vol. 51, No. 6, pp. 482-495.
https://doi.org/10.1352/1934-9556-51.6.482
SIBLINGS AND SOCIAL CAPITAL 2
Abstract
Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the lifespan. For siblings and people with intellectual and developmental disabilities (I/DD), these connections take on an increased significance as their families age and parents can no longer provide care. This paper presents findings from a qualitative study that addresses the question, “How do siblings support each other after parents no longer can provide care to the person with I/DD?” Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice will be discussed.
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Introduction
Sibling relationships are some of the longest-lasting relationships humans experience
(Cicerelli, 1995; Goetting, 1986), offering extended relationship experiences over the life course.
A key aspect of sibling relationships is the dynamic ways siblings use their resources to support each other at different points in each other’s lives. This paper examines support reciprocity as a transitive exchange, meaning that feelings of support and of being supported are not perceived as equal across two people in a relationship, but might be across multiple people. This also may provide opportunities for building social capital in sibling relationships when one of the siblings has an intellectual and developmental disability (I/DD) at the point after their parents are no longer primary caregiver to the person with I/DD.
Aging presents a set of important issues unique to families of people with disabilities.
Researchers concerned with the support needs of families of people aging with intellectual and developmental disabilities have recently expanded their interest in adult sibling relationships
(Dykens, 2005; Greenberg, Seltzer, Orsmond, & Krauss, 1999; Greenberg, 1993; Heller &
Kramer, 2006; Seltzer et al., 2005; Stoneman, 2005). Siblings often play an expanded role in the provision of support for aging people with I/DD as parents become unable to provide care or pass away. In recent years, an increasing number of adult sibling authors, researchers, and other leaders have begun speaking publicly about their experiences and relationships with their adult siblings with disabilities, as well as calling for increased support in their new role as caregiver
(Meyer, 2009; The Sibling Leadership Network, 2008).
This expanding interest in adult sibling relationships may be related to increased lifespans of people with I/DD. These longer lifespans require an extension of support, much of which
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remains informal and family-provided (Heller & Factor, 1991, 1993; Heller & Kaiser, 2007;
Heller & Kramer, 2006; Heller, Miller, Hsieh, & Sterns, 2000). Parents often expect their adult
children without disabilities to step in when they relinquish their caregiving responsibilities
(Freedman, Krauss, & Seltzer, 1997), and, as they grow older, often identify their other children
to be primary caregivers (Heller & Factor, 1991, 1993; Heller & Kaiser, 2007; Heller & Kramer,
2006; Heller et al., 2000).
One of the key issues in sibling research is the concept of reciprocity. Typical sibling
relationships are diverse, but overall characterized as being “reciprocal” across the life span
(Cicirelli, 1995). Reciprocity is the “notion that if you receive something from others, you are
expected to give something in return” (Bubolz, 2001). Among siblings of a brother or sister with
I/DD, these relationships tend to be more “asymmetric” in reciprocity, with nondisabled siblings
providing more support to siblings with I/DD than they receive from those siblings (Stoneman &
Berman, 1993). Reciprocity in the context of adult sibling relationships where one sibling has a
disability has been conceptualized by the inequality of emotional, physical/practical, and
financial resources shared (Stoneman & Berman, 1993). Implicit in much of this work is that
functional sibling relationships should, all in all, be roughly equivalent in the amount of support
given and received between both members of a sibling pair. When the relationship does not
measure up to this, it is thought to place a burden on the net support giver.
Some evidence exists that such sibling relationships in adults are similar in reciprocity to typical sibling relationships of adulthood (Doody, Hastings, O'Neill, & Grey, 2010). Hall (2005) found evidence that relationships of individuals with I/DD were reciprocal among siblings, parents, and adult children, but did not assess whether the reciprocity was equal. Others found
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little evidence of symmetric reciprocity between people with I/DD and their family members
(Lunsky & Benson, 1999).
These inconsistencies may suggest a gap in our understanding of how siblings experience
and expect reciprocity. We do not know whether siblings of people with disabilities have
expectations that their brother or sister with disabilities will provide them with support
commensurate with what they gave them, or whether others in their network provide support to the person with disabilities. Little research exists on the extent to which reciprocity occurs across
a network of family and friends, sometimes called a “transitive” exchange (Louch, 2000), or the extent to which transitive reciprocity may produce social capital for the sibling with a disability.
Using this idea, social capital could be created through transitive exchanges within networks of support, rather than a one-on-one reciprocal exchange between a person with a disability and his
or her sibling.
Social capital consists of “shared norms or values that promote social cooperation,
instantiated in actual social relationships” (Kiernan & Mank, 2011). Social capital creation can
be used as a way to conceptualize reciprocity, especially in social support, which an individual builds and mobilizes within the family and community over time (Furstenberg, 2005).
Additionally, social capital can be used to accomplish complex tasks or achieve goals that would
be unattainable on one’s own (Devlin, 2011) through “bridging” and “bonding.” Bonding social
capital exists between members of a group who “see themselves as equal” and as having some
sort of uniting characteristic. Participation in specific groups such as neighborhood associations
or advocacy organizations promotes an effective bond between individuals within this group.
According to Putnam, these bonds form the “superglue” that enables community solidarity.
SIBLINGS AND SOCIAL CAPITAL 6
Bridging, on the other hand, serves as the “sociological lubricant,” in which professional affiliation, rather than personal characteristics, drives the connection. Bridging social capital allows individuals to be connected to resources and information that would be otherwise unavailable through bonding social capital.
Social capital changes over the course of one’s life. In childhood, family members serve as role models for how to engage in reciprocal and meaningful relationships with others. One’s personal and family networks lay the foundation (Belcher, Peckuonis, & Deforge, 2011; Gotto,
Calkins, Jackson, Walker, & Beckmann, 2010) for social capital formation that constitutes the
“aggregate” of family resources (Belcher, et al., 2011; Gotto, et al., 2010; Mueller, Houser, &
Riddle, 2009) that facilitate the successful transition of children to adult life. Most individuals’ social networks transition from family-centered to peer and friendship-centered networks as the individuals get older and leave their family of origin (Gray, 2009). However, for people with
I/DD, this pattern differs, as they often remain closer to their familial networks as they age
(Knox & Bigby, 2007). This could have important implications for connecting to resources and supports throughout ones’ life.
Social capital also arises from “the exchange of resources or supports or services between people” that “is not based on the immediate return requirement…but rather the notion that people…have a general expectation that someone (emphasis added) will return the favor at some time in the future” (Chenoweth, 2004). In other words, social capital is not created through quid pro quo in individual relationships. Under this concept, reciprocity is assessed on a general level as an aggregate of all one’s giving and receiving of support. Family members would include extra-familial resources in their assessments of reciprocity. So while it may be that reciprocity is
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asymmetric between two people, it might be functional and adaptive if one includes a third
person or more.
Families draw on social capital to accomplish complex life tasks. For example, social
capital within families links members to one another and creates a network that helps parents
raise their children to become community members (Kiernan, Hoff, Freeze, & Mank, 2011).
Since much of the support that families provide people with I/DD remains informal, families rely
on social capital, often their personal networks and individual resources, to supplement what
government services cannot provide. This “family capital” provides the “resources for family
members that affect their current and future functioning” (Belcher, 2011). Where social capital
provides the “glue” that bonds communities together, family capital—more specifically, the
security it can provide—allows family members to participate in the world and broaden their
social connections with others (Belcher, 2011).
Families of people with I/DD encounter considerable obstacles when it comes to forming
family capital with their children. Numerous studies have reported the negative economic and
social impact of parenting a child with I/DD (Parish, Seltzer, Greenberg, & Floyd, 2004).
Raising a child with a disability may also hinder a family from forming social capital. For example, when a parent has to advocate for an extended period of time for support for the child with a disability, it may come at the expense of time devoted to other activities that lead to networking and social capital creation (Widmer, 2008).
One factor determining the amount of social capital available to children is number of siblings, more brothers and sisters representing “in this interpretation, a dilution of adult attention to the child” (Coleman 1988). Coleman posited that families with multiple children
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would mean less social capital invested by the parents in each individual child (Coleman, 1988).
Under this conception, siblings are seen as antagonistic to each other in regards to competing for parental resources. However, Seaman & Sweeting (2004) found them to be sources of knowledge about “extra-domestic arenas.” Their findings, in this particular study, suggest that siblings may widen and broaden the networks of younger children within the family. In this case, siblings are a strong influence on social capital building, with parents acting as a moderator between children.
Researchers suggest that, as people with I/DD age into middle adulthood they substitute professionals and other connections in the place of peers, spouses, and children (Widmer, 2008).
With sibling relationships being more likely to last lifelong, looking at these relationships may provide a different and unique lens for examining the use of family capital across the lifespan. In childhood, researchers, professionals, and siblings themselves have long posited that the time a parent must devote to a child with disabilities posits a unique stress on the family at the expense of nondisabled children (Stoneman & Berman, 1993). However, the evidence for this effect has been inconclusive (Doody, et al., 2010). One issue that has not been looked at is the social networks and social capital of siblings where one of the siblings has I/DD.
Siblings of people with disabilities generally have a different life course trajectory from their brothers and sisters. Siblings may have, as a result of these differences, a qualitatively different kind of access to social capital than parents and people with disabilities do. For example, it is likely that parent experience around disability has deeply affected parent access to social network—particularly bridging networks—that lead to growth and connections for themselves and their children. The present study explores how siblings mobilize their social
SIBLINGS AND SOCIAL CAPITAL 9
capital to influence outcomes for their sibling with disabilities. More specifically, the present
study looks at 1) the role of reciprocity in sibling relationships in social capital creation, 2) how
family capital is created through sibling relationships, and 3) how siblings use their social capital
to support brothers and sisters with I/DD.
Method
Participants
The sample for this study (Table 1) included eight adult sibling pairs in which one sibling
had an intellectual disability, and who lived around two major metropolitan areas in the United
States. The small sampling size enabled the researcher to focus in more depth within each sibling
pair.
Sibling pairs were recruited in one of two ways: 1) siblings with I/DD were recruited
through a local self-advocacy organization, or 2) nondisabled siblings were recruited through
sibling advocacy organizations in the community. The sample of participants consisted of
selected siblings of self-advocates whom the researcher had worked with previously and whose
parents were no longer providing primary support. All participants were adults who could
communicate verbally. It also targeted a diverse sample that included an African American and a
Latino family.
The sibling demographic data, including the siblings with disabilities’ impairment, was self-reported by the nondisabled sibling. Both siblings completed a consent process and agreed to participate in research that was approved by the Office for the Protection of Research Subjects at
SIBLINGS AND SOCIAL CAPITAL 10
the researcher’s university. All data was digital and kept on a secure, password-protected computer. Six of the eight siblings of people with disabilities identified as being primarily responsible for the support needs of the sibling with a disability. Two of the eight responded that other siblings in the family had shared/divided responsibility. In addition to the listed impairment, two of the siblings with disabilities were identified by their siblings as having mental illness.
Design and Procedure
The present study consisted of an open-ended qualitative design. Each sibling pair case participated in a series of three open-ended interviews with the first author: 1) a single interview only with the sibling with an I/DD, 2) a single interview only with the sibling who did not have a disability, and 3) a joint interview with both siblings.
The original purpose of this study was to explore the nature of how siblings support each other after their parents are no longer providing primary support to the individual with a disability. To accomplish this, we used open-ended interviews, as they are more likely to be equally directed by the interviewer and interviewee (Taylor & Bogdan, 1998). Since research on sibling relationships has generally not included the perspectives of people with disabilities, the interviewer took steps to avoid assumptions about the nature of the relationship of the participants. This led to fewer disability-specific questions, with the advantage of being able to focus the open-ended questions on the relationship itself, rather than on impairment and
SIBLINGS AND SOCIAL CAPITAL 11
disability. To ensure accessibility for siblings with I/DD, the basic interview questions focused
on concrete aspects of the sibling relationship. The question pool can be found in Table III.
Several strategies were used to ensure that the interview process was accessible to siblings
with I/DD, including establishing rapport, using short and simple questions, rephrasing
questions, allowing extra response time, allowing the sibling to choose a support person, and
using an accessible interview guide when requested (Mactavish, Lutfiyya, & Mahon, 2000). The
accessible interview guide was a brief outline of the interview questions using plain language
with accompanying pictures/illustrations. Furthermore, the information collected in the earlier
interviews guided and informed the follow-up questions in later interviews, also helping the
interviewer to choose more concrete follow-up questions. For example, in an early joint
interview, one nondisabled sister brought up the employment status of her brother with a
disability. The interviewer then addressed this issue in a subsequent interview and was able to
refer to concrete ways his sister supported him in working.
Qualitative research is strengthened by providing an authentic interpretation of the data.
Part of this requires qualitative researchers to “own up to their perspectives” (Taylor & Bogdan,
1998). The primary researcher has two brothers with disabilities. He also had known several of
the individuals through a local provider organization’s chapter of People First, a self-advocacy organization from which several of the interview subjects came. The researcher’s personal experience with the People First members allowed the researcher to create an immediate rapport with these individuals, contributing to a comfortable starting place for these individual interviews.
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Analyses
This study used thematic analysis and constant comparative coding (Taylor & Bogdan,
1998). The analysis process for this study was as follows. First, the researcher read though the transcripts, sorting data line by line into coding categories using ATLAS.ti (Atlas-Ti v.6, 2010).
The codes consisted of meaningful chunks of data and were varying sizes that communicated one idea. Then, during the coding process, the researcher looked for emerging themes and solicited/unsolicited statements (Taylor & Bogdan, 1998). Themes consisted of similar or related answers to the interview questions. Solicited statements were direct responses to the question.
Unsolicited statements consisted of novel or especially illuminative passages of transcripts that communicated an idea the researcher was not looking for.
For each interview pair, the researcher first coded the individual interviews, then joint interviews. When coding, the researcher affixed a prefix to each code to indicate if the code came from an individual interview from a sibling with a disability, nondisabled sibling, or from a joint interview.
When the coding was completed, the coding structure was collapsed into major themes. If codes did not fit into themes, they were recoded for improved thematic consistency where applicable. As the researcher developed the coding structure and themes, he compared and refined categories for clarity and authenticity. Finally, the researcher analyzed the pairs within and cross-case (Patton, 2002). This was done so that the researcher could analyze similarities and differences between members of a sibling pair, between sibling pairs, and between siblings based on disability status.
SIBLINGS AND SOCIAL CAPITAL 13
Finally, the researcher provided randomly selected participants a written summary of the
themes from the interviews as a form of member checking to ensure authenticity of the
representation of the data. The member-checking portion of this study did not produce any changes to the findings. A few siblings, while not offering specific commentary on the themes in the present findings, suggested that future research should include all siblings within a family and also siblings of people with mental illness.
Results
Results from this study describe how siblings build reciprocity and how family capital is created through sibling relationships. The overarching themes emerging from this study are that a) sibling relationships build reciprocity through enacting family roles; b) family capital is
created through reciprocity of support and through shared experiences and; c) reciprocity is built
through co-participation in activities and leisure experiences. Subthemes that emerged are
presented below. Table 2 presents the themes and subthemes that emerged from the analysis.
Theme 1: Sibling relationships build reciprocity through enacting family roles.
In the present study, siblings with and without I/DD reported actively exchanging favors
and support within their relationship to build family capital. Three subthemes describe the
avenues by which social capital is generated within the adult sibling relationship: enacting family
roles creates social capital in sibling relationships, reciprocity strengthens sibling relationships, and reciprocity is built through co-participation in activities and leisure experiences.
SIBLINGS AND SOCIAL CAPITAL 14
1a. Enacting family roles creates social capital in sibling relationships.
In the present study, enacting family roles created more opportunities for family capital.
For example, one of the roles commonly associated with sibling relationships, being an aunt or uncle, fostered opportunities for family capital creation. In this study, siblings with I/DD spoke often about enacting roles within their families. For instance, in this passage Miguel described his role while his sister was away on a trip, “My sister is out of the country right now, so I will
be taking care of my nieces and nephews.” For Miguel, he was filling in for the role of his sister
while she was away. While it is likely Miguel was not solely in charge of his nieces and
nephews, it is likely they felt comforted by his being there with them while their mother was
away.
Other siblings expanded on this enacted aunt/uncle role, showing it to be an emotional
connection. Jim said, “I love being an uncle.” He continued, “Tammy’s got eight. That’s a lot of
kids, and so does my brother.” As he continued talking about being a great-uncle, his facial
expression brightened and his responses detailed what he and his other nieces and nephews do
together. This suggests that Jim highly valued his role as an uncle, which he actively engaged in.
Jim looked forward to becoming an uncle again, saying, “My niece, Shelly—that is Tammy’s
daughter…That’s who is having another baby. She’s gonna have another girl. A little baby. [She
now has] two boys, and two girls…[It makes me feel] pretty great…I feel very happy.” Jim’s
narrative suggests anticipation of his new unclehood role.
SIBLINGS AND SOCIAL CAPITAL 15
1b. Family capital is created through reciprocity of support and through shared
experiences.
Siblings in this study showed that their relationships consisted of reciprocal interactions.
Siblings with I/DD described how they felt supported by their nondisabled sibling, and also how
they provided support to their nondisabled siblings. This illustrates how social capital is used and
co-created through a give-and-take process. Siblings with I/DD described their perceptions of
how they give and receive support. For instance, George recalled, “…My brother worried about
me all the time.” He continued, “When stuff happens, he make[s] sure I’m doing okay...and my brother worried about me. About two three years ago I got surgery on my hip bump…so they operate me that’s all…my brother he went moved by me so he worry about me.” George’s recollection illustrates his awareness that his brother cares about him, and his appreciation of his
brother’s support.
Showing appreciation for this support helps to maintain social capital. George also talked
about a key moment where he gave support back to Matt: “My brother went to a hospital one
time…he had a problem with his stomach. His appendix in here…I worry about him so
much…but he’s fine. He’s all better…I [did] worry about him.” By acknowledging how much
George worried when Matt was in the hospital, he contributed back by showing the same
concern and care for is brother.
Another important way siblings with I/DD provided support was to help with chores. For
instance, George relayed that he always clips coupons for Matt: “I like that…he wants to cut
coupons. Save on food and stuff.” George’s example suggests that he has a broad understanding
of support because he did “little” things to make his brother happy. Other respondents talked
SIBLINGS AND SOCIAL CAPITAL 16
about these types of activities, which often included cleaning or decorating. Michelle, another respondent, mentioned: “I like being a sister because I like helping with my sister out around the house, I like to decorate the house. I help set the table, things like that.”
Finally, Gloria spoke about how, since her mother was diagnosed with Alzheimer’s,
Martin has provided cognitive support: “Martin…has stepped up, [saying] ‘Where are you going?’…he puts away the milk. He has stepped up without being told.” By providing cognitive support to their mother in the form of reminding her about basic household tasks, Martin is fulfilling a key role in his family and building social capital by providing direct support to his mother, and indirectly, to his sister by participating in his mother’s care.
1c. Reciprocity is built through co-participation in activities and leisure experiences
Siblings co-create social capital in their relationship by engaging in shared activities and leisure pursuits. All of the siblings in this study described engaging in shared leisure activities with each other in the community and being connected to different communities. Shared activities were an important element in building supportive connections and social capital.
Mutual activities discussed in the interviews centered on leisure activities, vacations, and family traditions.
One example of a leisure activity happened when Michelle and Kim went to get a manicure. Michelle, when asked about what she likes to do with Kim, stated, “[We]…go out shopping. We put some makeup on and put nail polish on…” Matt and George talked about participating in a literacy group for people with disabilities together. In another example, George relayed how he much enjoyed participating in a book club with his brother: “…And then [we] go
SIBLINGS AND SOCIAL CAPITAL 17
to…book clubs too. I like…[going to TCBY] and afternoon I did and in night I read Harry
Potter.” By engaging in shared leisure activities, siblings with I/DD and nondisabled siblings
create more opportunities to make connections in the community and, in turn, build social
capital.
Other examples of shared activities consisted of John going to the museum with his
brother-in-law Clark, Tammy and Jim double dating, and Gloria and Martin eating at the restaurant another brother owns every week. These shared activities create spaces for siblings to enjoy each other’s company while also creating opportunities to form mutual connections in the
broader community and to build social capital.
Shared vacation experiences also created space for siblings to have fun and build shared
memories. Siblings recalled vacations and trips they had taken together in the past. Siblings
reminisced about the fun times they had visiting family in other countries, taking their first plane
ride to Florida, and going on trips to Las Vegas. George brought up his trip to Vegas with his
brother and cousin in the following passage: “…I want to go to …Las Vegas…I been there. It was awesome,” he continues. “…Me and my cousin…so we went to Vegas, played games, went to concerts…and I saw a showgirls…is awesome. I set him up one time. My cousin was embarrassed…(laughs)…I went, I went out [for] one girl. I went for him, take pictures. She kiss[ed] me. I like[d] it.” George’s experience suggests that he shares activities with his male family members that, in contemporary American culture are considered “bonding” opportunities for adults. The shared activities and leisure examples suggest that siblings have relationships that extend beyond the provision of support.
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Theme 2: Nondisabled siblings employ bonding and bridging functions on behalf of their
siblings with disabilities.
While siblings with and without I/DD had elements of reciprocity and provided fertile
ground for social capital, the implementation of social capital came mainly from the nondisabled
siblings. In this study, nondisabled siblings mobilized social capital to accomplish many goals in
respect to their relationships. Three goals in particular stood out in the present study. They were:
2a) Bonding: nondisabled siblings assist in daily support of people with I/DD; 2b) Bridging:
Nondisabled siblings mobilize social capital to improve employment prospects; and 2c)
Bridging: Siblings mobilized social capital to advocate for disability rights.
2a. Bonding: nondisabled siblings assist in daily support of people with I/DD.
Nondisabled siblings in this study mobilized social capital from within their own families
and communities to provide support to their brother or sister with I/DD. For example, some
nondisabled siblings described a team approach to support where guardianship and daily support
responsibilities were shared with other family members, usually other nondisabled sibling(s). For
example, Luisa was “relieved” when, after years of advocacy, she got a placement for Miguel
into a community organization support program during the day. Gloria provided day-to-day support to Martin while her other nondisabled brother and mother shared guardianship for him.
However, even the nondisabled siblings who played a central role relied on spouses,
children, and/or service agencies. For example, while Matt and George’s other nondisabled
siblings were not involved in George’s support, Matt did rely on his spouse. For example, Matt
said he “didn’t get it quite right the first time around” when it came to his marriage, citing his
first wife’s lack of acceptance of his brother as a factor in his divorce. He remarried to someone
SIBLINGS AND SOCIAL CAPITAL 19
who “accepted George as much a part of her life as” Matt did. Matt also made reference to
connections he made with service agencies for George’s daily support. He said he had to go to
“really high levels on occasion” to advocate for his brother because he felt the staff were “putting
George in harm’s way.” In other words, Matt used social capital in the form of key network connections to change the support situation for George, which he felt was detrimental.
One family in particular illustrates the complex nature of how bonding social capital can be mobilized within families to provide support to siblings with I/DD. John, Michael, Nicole, and Shirley were all siblings from the same family, with John and Michael both having disabilities. While in the past Nicole felt solely responsible for her brothers’ support, her role as primary supporter has shifted somewhat and is now shared with Shirley. John and Michael also receive support from the spouses of Nicole and Shirley and, in turn, John provides support to both Michael and his other sibling with I/DD. John recalled,
So Nicole arranged to come to my apartment the next Wednesday to have Christmas and
Joe…and…I w[ere] getting along quite good with Joe and he asked me…can I come to
your apartment?
Through John’s story, it is revealed that John mobilized social capital within his family by relying on his sister Nicole to provide transportation to Joe. By doing so, Nicole facilitated the support between two of her brothers, giving them an opportunity to strengthen their relationship.
John continues to explain how both Nicole and her husband provided an opportunity to deepen that connection:
SIBLINGS AND SOCIAL CAPITAL 20
Allen was giving me a ride back [after the appointment]…I had money with me—I was
going to offer to pay for Joe too…on the train, and I remember Joe wouldn’t let me pay
and I remember at that point I was I was making a six per hour a day. So I was going to
help him and get a taxi…I wanted to kind of make up for bad times [with Joe].
John’s story reveals that he was conscious of the lack of capital he had built with his brother earlier in his life, and now wanted to try to contribute something back to him. He worked in collaboration with his nondisabled sister to build social capital with his brother with I/DD. In turn, his role in supporting his brother with I/DD helped to support his sisters’ role as primary caregiver, and enabled him to contribute social capital to the relationship.
2b. Bridging: Nondisabled siblings mobilize social capital to improve employment
prospects.
Some nondisabled siblings recognized the importance of employment, mobilizing their own capital and connections to create employment opportunities for their siblings with I/DD.
Kim recalled her nondisabled brother’s connection with the community in getting their sister
Michelle a job:
So my [nondisabled] brother says, “I’ll work on the job side of it.” He hits the pavement.
He knows a few people in town [be]cause he’s lived there for six or seven years by
now…We don’t even know that there’s agencies available. I start making calls about
housing kinds of things. My brother starts pounding the street of local merchants. He
actually gets a bite from the local grocery store that’s willing to give [Michelle] a try.
SIBLINGS AND SOCIAL CAPITAL 21
While her nondisabled brother used existing connections to create the opportunity, Kim had to find a way to sustain the opportunity. She found out about a policy that would enable her to be paid for providing support to Michelle:
I had called [a local rehabilitation agency] to find out how the whole job coach thing
worked and found out that you could get a job coach or you could get the wage subsidy
for “x” amount of hours. Like, “Okay, I’ll be willing to be her job coach if we get the
wage subsidy,” ‘cause that gives a little sugar cube to the employer, take a chance. It’s
not really gonna cost you anything for “x” number of months. The T family in Western
Springs really have open hearts and that’s all I can say. They were willing to give a
chance in a job that probably is more advanced than what she even has today. [When she
was] working in the bakery, I went in and job coached with her. She’s still with the T-
Family Grocery Stores since 1993.
This passage suggests that three factors led to Michelle’s successful community employment.
One was her brother’s ability to use his capital to create an opportunity for employment. Second was the support Kim was willing to provide. Third, there was a policy that gave Kim the framework to implement that support; the funding for Michelle’s job coach was determined through state policy.
Many siblings with I/DD did not have these three factors of support. John, for example, did not have employment opportunities in the community when he lived with his mother. John recalled, “…I never really worked for anybody…I never really knew what it was like to have somebody telling me what to do…” According to John, he did not know how to talk to bosses or
SIBLINGS AND SOCIAL CAPITAL 22
potential employers because his early opportunities to build experience and employment connections were limited when he lived with his mother. According to John, this may have impacted his opportunities to build connections in the community through the workplace.
This situation changed when John’s mother passed away. He revealed in his story how, after his mother died, his sisters used their connections to secure an employment opportunity that he could be successful in. John said, in reference to Nicole, “Because when I lived [with her]…she found me odd jobs and I made some cash.” According to John, Nicole used her social capital within her community to get her brother connected to employment.
2c. Bridging: Siblings mobilized social capital to advocate for disability rights.
Siblings also mobilized social capital, usually professional connections they have made in the community, to advocate for better services. For example, Matt initially chose to get involved with statewide legislative advocacy to help get services and supports for people with I/DD.
Doing so, while helping to expand the rights of people with disabilities in general, also helped him to understand how the systems in his state worked and provided more opportunities to procure services for his own brother:
I was able…to talk to the right people, to be able to deduce that…this is the best process
to use to be able to effectively advocate for my brother. My training as an advocate kind
of…afforded me some valuable contacts on the state level so that I could be even more
educated and have other types of contacts that could assist if needed...I did have to really
go to very high levels on occasion to advocate on [George’s] behalf and in my view,
SIBLINGS AND SOCIAL CAPITAL 23
protect him from the staff that the provider had and that I thought was infringing upon
his rights and putting him in harm’s way.
For Matt, using his connections to directly advocate on his brother’s behalf was possible through
the mobilization of his social capital. Similarly, Shirley revealed a story about how she used her
personal connections to advocate on her brothers’ behalf:
[My husband] Clark worked with…our [state] representative[’s] spouse. So that made it
a little bit easier to get in the door…I had done a little bit of public testifying...One of
the…tricks that I used…I ran around with this laminated poster of [my brothers] and I
would shove it in people's faces…[as a way to get]…a little bit more attention that way.
Shirley made advocacy for supports and services a central part of her role in providing support to
her brothers with I/DD. While Matt began his advocacy with a more advanced understanding of
disability systems in his state, Shirley’s understanding was more limited. Shirley was starting
with little knowledge about disability, saying, “I realized that to get him any Social Security
benefits, he had to have a diagnosis.” She describes having to investigate the steps to receive that
diagnosis. However, in both of these examples, advocacy was a primary aspect of their support
role.
Discussion
Reciprocity is a precondition for social capital
In the present study, reciprocity is built through shared activities and experiences between siblings, which in turn can create opportunities to build social capital. Under a social
SIBLINGS AND SOCIAL CAPITAL 24
capital framework, people with I/DD have an active role in “producing reciprocity” (Luecking,
2011). Hence in the present study, people with I/DD focused more on reciprocity within their families through enacting family roles and actively participating in shared activities. Nondisabled siblings, in turn, mobilized their social capital in the community on behalf of their siblings.
The way siblings spoke about their relationship is consistent with Chenoweth’s description that reciprocity can produce an expectation of exchange in the future (2004).
Additionally, reciprocity is also consistent with “bonding,” while nondisabled siblings facilitated
“bridging” roles in social capital creation (Carter, Austin, & Trainor, 2011; Walker, 2011). In this study, reciprocity seemed to consist of siblings with disabilities enacting their family roles
(e.g., unclehood or aunthood) in exchange for nondisabled siblings bridging them to resources in the community they themselves might have a more difficult time accessing.
Reciprocity and bonding social capital
Siblings with I/DD tended to perform “bonding” activities in that they focused on their families of origin, doing things with family, and fulfilling new family roles such as aunthood and unclehood. Examples of this can be seen in George cutting coupons and expressing emotional support with Matt, or John supporting his other brothers with disabilities in socializing and connections. Under this conception, bonding and bridging functions of social capital are asymmetric; they are not equal to each other and occur with different frequency and intensity.
For example, George’s clipping coupons might be something small he does consistently over time, whereas Matthew’s advocacy may be more intense, but a shorter duration.
In another example, Martin built bonding social capital in his family by providing support to his mother who was diagnosed with Alzheimer’s. Martin had a chance to, in a presumably
SIBLINGS AND SOCIAL CAPITAL 25
time-limited way, enact bonding functions of social capital by enacting his family role in taking care of his mom. This in turn gave his nondisabled sister time to find a placement for their mother, something that George would not likely have been able to do on his own.
Other examples included people with disabilities providing support to other siblings or other family members, such as providing care for nieces and nephews. Miguel’s watching his nieces and nephews was likely a low-key, consistent way he could support his sister in “stepping out” momentarily to run errands etc., including trying to find a day program for him.
Bridging social capital was usually fdone by nondisabled siblings
The bridging function employed by nondisabled siblings was perhaps most sharply defined through the area of employment. They used their social capital as a “bridging” function to assist in obtaining jobs in the community for their sibling with a disability and advocating for community services and supports. For example, Kim and her brother both employed bridging functions of social capital to achieve employment for their sister. Previous studies have underscored the importance of people with I/DD benefitting from new ways to get involved in their communities across different networks (Rogan & Rinne, 2011).
Using a social capital framework, in particular, transitivity, for looking at sibling relationships might also help uncover the complexities of relationships than occur within a sibling dyad. People may rely not on one-on-one exchanges of support, but rather networks of asynchronous or unequal exchange to produce reciprocity. Under this concept, reciprocity is experienced more globally than a quid-pro-quo exchange. For example, in the present study transitivity occurred with spouses of the nondisabled sibling. Shirley used her husband’s political connections to get connected to support. It is doubtful that she expected a directly reciprocal
SIBLINGS AND SOCIAL CAPITAL 26
action from her brother in return. Additionally, while siblings with disabilities reported helping
out through enacting unclehood roles as an important aspect of their relationship, nondisabled
siblings did not. It might be that nondisabled siblings’ children felt supported in a unique way
from their uncle or aunt that nondisabled siblings did not report.
Future research should include information about family capital, networks, and
underlying transitive connections of support for siblings, heeding previous calls to situate sibling
relationships within broader community, environmental, and policy factors (Heller & Arnold,
2010; Heller et al., 2008; Heller & Kaiser, 2007; Heller & Kramer, 2009). The greater extent to
which people with I/DD and their siblings increase their capacity to mobilize social capital in
bonding and bridging, the better the community outcomes of people with disabilities and their
families are likely to be.
Race and sibling relationships
Though issues related to social capital and race did not directly arise out of this research, it is plausible that there were differences in expectations around siblinghood that could impact
social capital. African American and Latinos might have different levels of bridging and bonding
social capital, especially when socio-economic status is considered (Denner, Kirby, Coyle, &
Brindis, 2001; Litwin & Shiovitz-Ezra, 2011; Swartz, 2008). Cicirelli (1994) notes that sibling
relationships are more “fundamental” in determining family functioning in non-Caucasian
families where siblings have greater expectations of helping to raise their brothers’ and sisters’
children (Cicrelli, 1994), which is consistent, perhaps, with Miguel and Jim’s example. There
could be some differences between racial/ethnic groups in the present study, but with so few
SIBLINGS AND SOCIAL CAPITAL 27
participants, differences were hard to determine. Future research could perhaps find stronger
relationships by interviewing more families from various racial and/or ethnic backgrounds.
Limitations and future research
While member checking in this study confirmed the credibility and authenticity of the
results, some important limitations need to be addressed. The main limitation of this study is that
it relied on exemplar cases of siblings who have positive relationships. Not all adult sibling
caregiving relationships may be marked by this level of emotional or physical closeness. The
findings of this study would probably look very different, for example, in sibling relationships
that were distant or antagonistic. These siblings might feel some sort of honor or duty to their
family, but might be much more reluctant or ambivalent about being involved. The self-selected nature of the exemplar sibling relationships in the present paper may have screened out siblings who do not have the range and depth of social capital across the family and community.
Additionally, the functional level of siblings with I/DD does not represent all experiences. Most of the siblings with I/DD in this study were able to tell stories about their relationships in their family and reflect on their experiences. Social capital may work differently in sibling relationships in which the person with I/DD is not able to communicate and reflect upon their relationships. Finally, though not thought of as a key variable in this open-ended exploratory study, socio-economic status was not measured well. Other research has documented at length how social capital is related to socio-economic status (Carter, et al., 2011).
The topic of siblings with I/DD mobilizing social capital requires further investigation. In particular, it would be interesting to explore siblings with I/DD who are employed and connected to the community. It is possible, for example, that people with I/DD who are employed longer
SIBLINGS AND SOCIAL CAPITAL 28
and are more economically self-sufficient rely less on their nondisabled siblings for support.
Future research in this area may want to consider interviewing self-advocacy leaders or individuals with I/DD who have a long work history. It is likely that these individuals have more connections to their communities, raising the possibility that they could more easily mobilize social capital and rely less on the social capital of their siblings and other family members.
Additionally, while the open-ended interview protocol was designed to mitigate negative and positive dichotomies in sibling research, it was a limitation in terms of the depth of the knowledge gained about social capital and reciprocity. The findings in this study emerged from questions not particular to these concepts, but were coded using these concepts. A future study might better capture these concepts if the research questions focused on them in an in-depth and specific fashion, particularly around network mapping and mobilizing.
Finally, it should be noted that this research study might be biased in ways unknown to the author. While it is believed that being a sibling of a person with a disability provides key
“insider” knowledge in this context, it might have led the respondents to respond more positively or more negatively about their relationship than they might otherwise do.
Future research could also explore ways to build social capital for nondisabled siblings, to maximize support of people with disabilities. This type of research could meaningfully address the support provided by siblings with I/DD that extends beyond sibling dyads. Also, future research on sibling relationships might be strengthened by including some measure of social capital in survey and/or qualitative interview protocols (e.g., (Walker, 2011).
Implications.
SIBLINGS AND SOCIAL CAPITAL 29
It is likely that siblings will continue or perhaps expand the support roles they play in
each other’s lives. Results from this study underscore the impact of siblings’ social capital on
employment outcomes for people with I/DD, and the importance of employment on the social
capital of people with disabilities. People with I/DD who are employed for a longer period of
time have more opportunities to build connections as well as their own economic self-
sufficiency. For siblings in later life, this could mean nondisabled siblings having to provide less
support while people with I/DD experience greater economic empowerment.
Conclusion
Siblings in this study co-created social capital in the support relationship. Nondisabled siblings mobilized their social capital to create a network of support and maximize employment and community participation outcomes for their brothers and sisters with I/DD. This study illustrates that social capital can be a useful framework in understanding support in sibling relationships expanded constructs of reciprocity and burden. Future research on sibling support is encouraged to use theories of social capital to examine how supporting all family members can lead to positive outcomes. h
Acknowledgements
Support for this study was provided by funding from the US Department of Education, Office of
Special Education and Rehabilitative Services, National Institute on Disability and
Rehabilitation Research, Grant #H133F110018 Mary E. Switzer Research Fellowship,
Grant #H133B080009 to the Rehabilitation Research and Training Center on Aging with
Developmental Disabilities: Lifespan Health and Function, and Grant #H133B03113 to
SIBLINGS AND SOCIAL CAPITAL 30
the Rehabilitation Research and Training Center and Aging with Developmental
Disabilities.
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